Embrace neuro-diversity or adopt genetic cleansing?
I'd like to introduce two guest bloggers.
Dr. Glynn Thomas - a consultant psychiatrist who has worked for the National Health Service for over thirty years & his wife Andrea Earl -a playwright & also writes for TV.
Gynn & Andrea hope their blog inspires much freethinking debate.
As we watch our two year old toddler joyfully playing with his favourite cars and garage set as he utters his first words we are appalled at the existence of state backed mechanisms to cleanse society of his kind.
No, we are not sitting in Thirties Germany or Nineties Balkans but Twenty First century Britain where we are offered tests to ensure our child is born without blemish into a world striving for sterile perfection.
We are also aware that a politician reading the above would argue that they have no intention of such a cleansing but that these mechanisms exist merely to allow families choice.
Do eugenics deserve such acceptability in twenty first century society?
https://www.ucl.ac.uk/~ucbtdag/.html
Were we right in allowing such a beautiful human being into our midst or should we have done our bit to cleanse the human gene pool?
Will the first generation of Britons with Down’s Syndrome embraced by main stream schools and routinely becoming literate and numerate be the last?
With advanced genetic testing more and more unborn infants carrying Trisomy 21 are being aborted. Will our world be a better place without people with Down’s syndrome?
www..org.
The question is not whether the world is better off with people who have Down's Syndrome. Eugenics is just a euphemism for cleansing. It is Donw's Syndrome first, then anyone who is ethnically "different", and then those who are in disagreement with society. We are heading towards Hitler's Germany, Stalin's Russia, Chavez Venezuela, Bush's USA.
There is a view that perfection in God's eyes is NOT the same as perfection in ours! Would you believe such a thing!
Perfection in our eyes in many cases suggests that we 'turn our back' on those with defects be they physical in limbs or mind. At the most we may 'provide some care' for them but not make any great efforts to incorporate them into the mainstream of everyday life and activity.
Whilst spending some time in Thailand I discovered that many Buddhist practitioners consider malformed individuals as having 'attracted' bad karma. It was therefore their due and nothing much could be done about it.
Some Thais will ignore these people and others make an effort to care for them in some way, depending on how they view and practice their own buddhism.
But what of God's view of perfection?
Well one particular theory suggests that there is nothing really imperfect at all in God's view. Persons born with so called 'defects' in his/her view are still 'born in the image of God'
And how we deal with these persons is a challenge for us and a measure perhaps of our own spiritual progress or otherwise.
Listen to the countless stories of parents with 'malformed' children and they will almost without exception tell you that despite all the 'difficulties' that they encounter the child or children are still a blessing. This does not of course mean that they can always cope will with the 'difficulties' and do not need support and help from family, friends and state.
A friend recently talked to me about being a 'half -caste' and the difficulties that had presented in life for her. My gentle response was, there are no half-castes in God's eyes.
We are all full-castes, caste in the mould of God. But as full-castes we have a choice. We choose to be black, brown, yellow, pink, whatever. Tall, short, fat, thin.
And doesn't it make life fascinating - different languages and customs, different climates, different foods. How bland life would be if we were all the same!
Pro lifers - like George Bush (so you can hardly accuse him of genetic cleansing given that it happens pre birth) - tend to be people who think on the right. Pro abortionist tend to be people who think on the left. How can a left thinking person argue against abortion for some diabilities and not against abortion per say? This is a grey area which needs debating.
Ought. God. Rather than freedom we are into the land of obligation - of being trussed in contracts.
Does modern society allow us to be any more free than in the past? Would healthy families work longer and longer hours to support an increasing population of disabled people? Even if there's reluctance to answer explicitly, how many will pay more tax?
On the one hand we hardly want to go down Hitler's route, but on the other it's ludicrous to attempt to make out that extreme disability is not a burden. (--Or is this all we're going to be allowed in our new "freedom": to use language in so far as it doesn't hurt other's feelings?)
Unreal talk, eventually, has unreasonable consequences.
'(--Or is this all we're going to be allowed in our new "freedom": to use language in so far as it doesn't hurt other's feelings?)
Unreal talk, eventually, has unreasonable consequences.'
On the contrary....doesn't the content of the blog invite a debate which will be, by it's very nature, provocative?
I remember a day or two after Enoch Powell made his "rivers of blood" speech, our English teacher invited discussion of it. I said there were two separate issues: whether what he said was correct, and whether it was helpful to say it - say it in the way he did. I was depicted as a racist by those around me.
Yes, I do think both the ³ÉÈË¿ìÊÖ and these blogs want to encourage debate. But as in so very much since the nineteen-sixties, there's fashion. I'm not angry at people wanting to stand by their friends (and there were no black faces in my school, let alone class, then) but I think they should have better reasons than just some vague concept of superiority, some early political correction, toward the son of a manual worker.
Should people come down almost automatically on one side or the other of debates? Is it SO obvious about (to go right in at the deep ends) about racism, or anti-semitism? The French are trying to pass a law outlawing "denial" of a different massacre. Is all this "correction" the right way to go about things?
As Timothy Garton Ash was saying in the Guardian a few days ago, the veil is neither here nor there, freedom of speech is.
Of course one shouldn't 'come down automatically on one side or the other of debates?'
But someone HAS to put it 'on the table' in the first place so it can be explored.
If Jack Straw hadn't raised the issue of 'the veil' we would be falling into the trap of 'what's fashionable at the moment'.
Discussing 'certain' religious & cultural symbolism in any way negatively seems to be frowned upon more and more.
'As Timothy Garton Ash was saying in the Guardian a few days ago, the veil is neither here nor there, freedom of speech is.'
Marge Bere (Editor, Reproductive Health Matters http:/www.rhmjournal.org.uk) makes a great point in her letter to today's Guardian - letters@guardian.co.uk -
'What is missing is an international perspective.....from Iraq to Egypt to Malaysia, women are under pressure to cover up..... by comparison most British Muslim women are in a privileged posiition. But it is naive to think they are making choices in a political vacuum....'
Similarly Andrea Earl invites us to look beyond our fought for feminist issues on the 'right to choose' ....
'How can a left thinking person argue against abortion for some diabilities and not against abortion per say? This is a grey area which needs debating.'
....in conjunction with advances in science, medicine and our society's advancement in the social inclusion of groups of people previously marginalised if not hidden away.
Can I be provocative too? My mother's brother, who died when I was three, was epileptic. Very likely his condition could have been helped by modern drugs, but at that time he was put in a home, at Blackburn. My mother and grandmother would visit him, and he'd come home for Christmas.
Over the years of hearing abortion mentioned on TV, my mother's often said how easy it is for those who aren't directly involved to talk. They don't have the bruises on their bodies, or the teethmarks - from other patients.
She tells me I once met him, but of course I've no recollection. And she tells me one of the staff at the home warned her off marrying a boy who also had epilepsy in the family.
Are these country people I've grown up among, so stupid? My headmaster introduced me to the saying that "a little learing is a dangerous thing". My decision to keep away from university, and most of normal life, wasn't to do with that - but when I look at Iraq I do wonder where the country's gumption has gone.
I guess another part of the great jigsaw of life in terms of this discussion, is how much we value or undervalue life itself. By that I mean our very essence and existance
Totalitarian countries tend to undervalue life itself for ideological reasons, communism did the same thing. Go to any of these type of countries and ask to see the psychiatric hospitals, old peoples homes and homes for the disabled. if they have any at all you will be appauled.
Our view on abortion or helping the disabled with compassion is related to our own view of life itself. If we cherish and value the meaning of our existance and life, then the more I believe we will cherish others, including the still to be born child.
If we undervalue life, then we will turn our backs on others with greater needs than ourselves.
If you read the core message in all the major religions you will find compassion and serving the needy, including the widows and children.
The strange thing is how this message is then translated into human behaviour in the Christian, Muslim, Hindu, Buddhist and Jewish worlds.
Yes for me the degree to which we can show compassion to all others (and that means not killing or turning our backs on anything less perfect than ourselves), then the same degree can be found in our embrace of life, value of life and protection of life. There is a direct correlation
Even right wing societies have their ways of bestowing "worth" (or the lack of it). It's questionable whether the right values life more than the left. They want people who contribute to the enhancement of their message.
While it's difficult to deny media access to controversial cases (such as a legal battle over the turning off of a life support machine) surely we can see that some of these become means of political point scoring, after which the family, and perhaps the individual concerned, have to live with the consequences, the cameras having moved on.
Back to the point in question as opposed to expressing ones own religious or political beliefes (althought nothing against that it is about free thinking after all) But can anyone out there please address the question. Is Down's syndrome a burden? Is it a severe disability that should be exterminated?
Are LEARNING abilities/disabilities/genius disorders?
I think YOU are missing the point here. Any disability can either be viewed as a blessing or a curse by the person with the disablilty or near and dear ones.
What I have been discussing is how we all see the world of disabilities and non-disablilties. And this world MUST include our sprititual and religious views. Otherwise we become mere automatons.
Sure you can view disabilties in terms of are their economically usefulness, socially usefulness, politically usefulnessetc. And we can all have views on this.
but when it comes to the crunch, when we are disabled or near and dear are - then it is back to making some sense of it all. And science or medicine has never aided us very well in that area.
When our deepest emotions are touched when we are confused to the core, when we can't make sense of the good and the bad in our lives then science and medicine can't help.
And we then often turn to our spiritual side. So for me any discussion on this topic without it is dead!
I agree that when looking at disability it is not just a question of science and medicine although I think sceince can help us understand the reason for disability (even naming the gene in some instances) The question is about what we do, and what society allows us to do, before the individual with the disability is born. And the reason the question was posed in the first place is because I find it shocking that those least able to speak out for themselves are silenced before bith. Yet would I have asked to be given a child with a disability? Probably not. Would I change my experience? Most definatley not. Because being the mother of a child with a disability is probably the most profound thing that has ever happened to me and has certainly changed my world view in a 'spiritually' uplifting way. And the only 'curse' surrounding my son's condition is societies view of him. Which is why I want to provoke the debat. In the UK 90% of women diagnosed pre-natally to be carrying a baby with Down's Syndrome terminate the pregnancy. Is the institutional acceptance and indeed encouragement of this morally wrong?
Well I didn't realize you wanted to get into the real heavy stuff! ABORTION or NO ABORTION.
Why do you think that this very topic causes a furor all around the globe, to the point of people being prepared to kill and die for their belief?
Well for starters part of the answer is that it goes back to when is a feotus a real human?
Because killing a real human just because he/she is disabled is considered a crime once they are out of the womb.
And once again you can't get away from religion or spirituality, no matter how hard you try. But I would hazard a guess that many of the pro Abortionists are not highly religious or spriritual.
Conception and birth to me and many others is still an amazing 'miracle'. We often take it for granted but when you really stop and think it through in all it's phases it is a 'miracle'.
There is therefore something obscence for me about killing a 'miracle' In fact there is something un-Godly about killing a miracle.
There is one simple but somewhat costly way of dealing with the issue of disabled foetuses and newbornes.
Embrace them as no less of a miracle that any other kind of birth and the country bears the cost. Oh yes I know that there are small titbits given at the moment - but I'm talking about the real cost, throughout the natural life of the disabled person.
A country and government and people who are really able to embrace this concept would lift humanity up several notches.
There is no real need for abortions if this concept is adopted - abortion to my mind has become a convenience of easy living.
It is part of I must have a carefree and comfortable life at all costs. I must be allowed to be a consumer of life and let nothing get in the way. The trouble with consumerism is that it becomes all CONSUMING.
Some newbornes of course are still born at birth or die soon after birth because their disabilties are so severe that they are incompatible with life itself. That is a natural process. Killing a 'miracle' is not!
Let the debate begin
It is true that abortion on demand came out of the rise of librilism and the 'free love' atmosphere of the post war era. And through the seventies and into the eighties women much like myself believed in the 'right to choose' to give birth or not to give birth. And even though we had the pill we still used the argument of the horrors of back street abortion as our weapon to expect abortion on demand. And we accussed men of trying to control our bodies. And many of us had abortions willy nilly and thought it our right to do so. And that our life was more important than that which lived within us. Looking back now many of my 'sisters' and I think we were wrong. I now believe that life is precious and that we are a selfish generation who expected to have it all and aren't we paying for it? Exhausted with work and family we do justice to neither. Its about time women took back responsibility for their bodies and what they are for; creating life in whatever form it arrives.
Creatures we've grown close to, and that must include our own view of ourselves, are hard to put down. We don't want to have the materialistic assessment that distant people will have.
On any day I can turn on the news and hear of deaths. Yet I know that if my pet cat died I'd be more upset than hearing of these humans.
It's almost inevitable that humans are going to ascribe value to humans -- because of how it reflects on themselves. Yet values are placed on safety (insurance companies will tell you how much a life is worth).
The bigger question is why do we persist in asking questions to which the answers given will be fatally subjective? Why are we offering choice when we know the means to exercise it depends on wealth? When a charity mailshot arrives, it has these appealing faces of fellow humans -- not a philosophical argument.
There is no moral right or wrong. We have an obligation to obey the law, beyond that is an attempt to foist care for the families of the articulate onto others.
"those least able to speak out for themselves are silenced before bith." So what's new? Life counts those who make it onto the stage, to vote.
The law? The people who make the laws want to discourage behaviour, like murder, which would make our lives unliveable, if they became general. So they get called "wrong".
My Down's Syndrome son, George, is now 17. He's been through mainstream education and is now at college. He's charming, funny, sharp and he has the same faults all of us have. He's a human being in other words.
He was recently watching an episode of Eastenders in which the characters were agonising over the birth of a Down's baby. He then went and asked my wife WHY they were so anxious about having a Down's Syndrome baby. It stumped us a bit!
I'm a writer myself and as a breed we're not immune from insensitivity but had no one on that programme actually thought "Maybe there's Down's kids and adults watching as these fortunate fictional people with (apparently) all their faculties struggle with their feelings about giving birth to a mutant?"
Sometimes well-meaning hand-wringing can be worse than robust prejudice.
It's not just about the parent and it's not just about the child. The whole thing is horrendously complicated.
Addressing the question more directly, we loved George from the word go but we did (and increasingly do) fear for his future. As his brother and sister go out into the world, he will probably always be at home. All he wants now is a girlfriend and a bunch of mates he can have a laugh with. But in our risk-averse culture how does he have that without always being in some way cared for and monitored and intruded upon more than 'normal' people are? He's part of a very big extended family. He's happy most of the time. But he won't always be a child. Spare a thought for the people who do abort their babies. Maybe they're actually doing it for the best reasons. Parents can only do so much. With kids, heartache is always a possibility. With Down's kids, it's a certainty...
Hello Esther and Andrea, by the way!
Hi Paul what a very heart warming story - thanks for sharing that. It's great to hear of a disabled person can be part of a loving family and enjoy life.
You say you worry for his future and yes you should. That's where I believe society has a grave responsiblity to support you here and not with institutionlize care - I've been there and done that - not usually the best.
If we believe in the sanctity of life and the rights of all humans to have the same standards then your son needs 'special' support and more so when you are no longer there. That for me is the challenge of a caring society. Apart from the fact that that same society should also be supporting you now.
spare a thought for those who choose abortion- of course we should. But abortion has now been deemed legal in many countries for various reasons- doesn't make it right of course.
So those who choose abortion are legally protected - that is not the issue here. The real issue is about 'killing' other human beings because we don't believe they are 'perfect' and asking ourselves:
Is this a moral right? (not legal) is this a spiritual right? (not legal) is this a humanistic life? (not legal)
Sometimes making it legal gives us a way out of our moral dilemmas. Yes caring for a disabled child is challenging, tiring, and difficult and those who do it need all the support they can get from society in general including non-prejudice views about it all - but 'killing' is other thing.
Do we have the right to kill? some would say never
PS - I was talking to a colleague about this very topic recently and she said:
"I believe it is the disabled in our world who make us more human, more compassionate, more caring."
and of course conversely without people who are disabled and who draw our attention and challenge us to meet their extra needs, we would probably be a less caring world.
Now there's an interesting thought ain't it so!
When we pose the question of "embracing neurodiversity" what we are actually asking is; is it okay to be different? Some among us are very independent to the extent that we are compelled to be alone up a mountai for weeks on end. There are others among us, with or withourt disabilities, who need, and will always need support and help. What is wrong with that? I understand the worry that a parent with a learing disability child has about the future, but I have to ask is that more to do with us than with our children?
Isn't the 'normalizatioin' and integration of individuals with Down's syndrome into society which has occurred over the past thirty years or so being undone by present practices?
Once upon a time we locked people like our children away in institutions. We are shocked at such cruel practice. Now we kill them before birth. Which is worse?
If we could look into the future of a baby's life before birth and saw that it was going to become a heroine addict and bring terrible woes upon itself and its family or would develop schizophrenia and suffer horrendous distress, or any other number of difficulties - would we advocate a termination of that individual? I guess most people would say no. So why is it okay to terminate the life of a person with Down's Syndrome who will bring joy to others and enjoy life themselves?
My intention is not to judge an individual for choosing to abort a child with down's syndrome, because society is encouraging of this. What I want to do is provoke society into looking at its inability to cope with difference and disability. If society were more accepting of difference life would be easier for those who are. And those of us who think we are 'normal' might learn something.
(And hello back to you Paul. xxx)
We still don't get it do we - isn't it amazing on a planet as small as earth on a cosmic scale we have so much diversity - culture; religion; culture; colour; culture; male and female; heterosexuality and homosexuality etc etc and we still argue and fight about it and kill sometimes in the name of "you're not like me"
Someone once said that planet earth was a big 'training camp' where we all have the opportunity to learn to live better lives and be at peace with each other. The problem is no one seems to be running the camp at the moment and George Bush has put his hand up for Camp Commandant!
I think we'd better take another vote!
Please don't think I'm pro-termination or into the renaissance of any sort of retro eugenics, I'm not and I would do everything in my power to resist any move in that direction. (I do believe it could become fashionable again just as it was in the Thirties and that is very worrying indeed!)
No, George is the love of my life and I wouldn't have him any other way. You can't argue with love.
But you do not progress with any disability issues, I don't think, unless you tell the truth.
It may be rewarding and enriching for other people to have disabled people in their midst, but what about them, the disabled people themselves? How are they rewarded and enriched? They've been given a bum deal by genetics or by accident and that has to be addressed.
We fear the weak and the broken and the disfigured and the deformed. It's something deep and not very pleasant in our evolutionary psychology that we have to come to terms with until maybe we evolve into better human beings.
Until we do don't we have to recognise that prejudice is not in other people it's in ourselves. We're all prejudiced in some way- until of course we become the victim of prejudice.
I like to know where prejudice comes from, both in myself and in others, rather than tell people they shouldn't be prejudiced. That's the difference between a writer and a politician, I suppose.
Ultimately,I agree with just about everything you say, Esther and Andrea, but since this is about freethinking and not specifically a practical debate on what can be done, I just thought I'd raise something that nags at me all the time.
Not sure where it takes us, but for me it's positive to recognise these things and not negative.
Good luck with your son, Andrea. My heart goes out to you but with a mum like you he can't help but thrive.
Hello Paul.
'Not sure where it takes us, but for me it's positive to recognise these things and not negative.'
I agree . that's why it's great to be able to have the 'debate'.
'Until we do don't we have to recognise that prejudice is not in other people it's in ourselves?
I've been struggling with that one a lot myself, lately.
(There's a question around that issue on The People's Choice. You can vote on line-you never know...we may get to explore a little further.)
'We're all prejudiced in some way- until of course we become the victim of prejudice.'
Until I fell in love with Alfie (Andrea's son) I never gave any real consideration to the issues surrounding disabilities/learning difficulties.
But he changed all that & made me look closer at myself. I'm grateful for that.
I've always thought that prejudice is born out of fear. We fear that which we do not know instictively. For in the unknown lurks danger. Which is why I think normalization and integration is so vital for all of us. The more we experience difference in others the less afraid we become.
And so it would follow that the more people are brought up in school and other community activities with individuals with Down's syndrome or any other disability, the less they would be inclined to reject such a person coming into their personal lives.
One of my aims in life is to push positive attitudes surrounding Down's Syndrome because people don't understand that our children our 'the love of our lives' if they did they might seek to have one just like ours instead of seeking to reject them.
I have a story idea in my head which is set in the future where a child born with Down's Syndorm is so rare that people come from far and wide to look in awe upon the sigular beauty of such a special child who's birth is the cause for great celebration and wonderous joy.
This is the real problem: we don't really understand anything until we have direct or indirect experience of it. So what price empathy and intuition and all the books in the world? How do we get people to understand without having the actual experience? This is the role of the writer again. Especially the writer of fiction. Because anything can be imagined. You allow people to imagine what it would be like if...Banal stuff I know, but in today's culture of hyper realism (which is so real it's unreal!) in the media, maybe more should be done to push the imagination? I'm trying to write a radio piece at the moment in the voice of a Down's Syndrome teenager. Arrogant perhaps or a way in to find some sort of empathy?
Away with all this dualism - let's have neuro-diversity and genetic cleansing at the same time. Flip a coin to pick which one you want!